Call To Action: Help Pass SMA Bill

April 20, 2010 by Victoria Strong

Calling all SMA supporters! We need your help!

As you know the SMA Treatment Acceleration Act is making its way through Congress. While the last few months have been focused on health care reform, our little SMA bill has been circling the desks of lots of Senators and Representatives. The good news is 90 Representatives and 15 Senators have signed on in support of the SMA Treatment Acceleration Act. But, we need more support to get this bill passed. And YOUR voice matters.

So we are asking you to once again reach out to your legislators -- both Senate and House -- asking them to cosponsor the SMA Treatment Acceleration Act. Both calls and emails have an impact. And if you have already contacted your legislator, send a reminder with a note about why this bill is so important to you.

If you are unsure of what to write, consider using the following as a template by copying and pasting the below text into the form:

Dear Congress(wo)man/Senator :

As your constituent, I am writing to urge you to cosponsor the SMA Treatment Acceleration Act (H.R. 2149/S. 1158). This legislation will help in our efforts to find a treatment or cure for Spinal Muscular Atrophy (SMA), the number one genetic killer of children under the age of two.

SMA is an inherited disease that destroys the nerves controlling muscle movement, which affects crawling, walking, head and neck control, swallowing, and even breathing. The gene mutation that causes SMA is carried by one in every 40 people, or approximately 7.5 million Americans.

[If you wish, this is the ideal place to insert a few lines about your personal experience with SMA.]

Researchers have identified the gene responsible for SMA, as well as a disease modifying back-up gene that has opened the door to promising new treatment pathways. SMA has been selected by the National Institutes of Health (NIH) as the prototype for an accelerated therapeutics development program, singling out SMA as one of the diseases closest to treatment based on scientists advanced genetic understanding of the disease, of more than 600 neurological disorders. Additionally, national non-profit organizations have been spending more than $20 million per year on pre-clinical and clinical research. These research efforts have resulted in several drug compounds that have shown promising results in cellular and animal models of SMA.

The next step in beneficial drug treatment development for SMA is for these compounds to be tested in national clinical trials on people diagnosed with SMA in order to demonstrate therapeutic safety and effectiveness so that they can then secure approval by the Food and Drug Administration (FDA). This activity is extremely expensive for family organizations and the small biotech companies doing SMA research privately. The SMA Treatment Acceleration Act seeks to build on the substantial private and public investment thus far; accelerating treatments for SMA by upgrading and unifying existing clinical trials sites to create a national clinical trials network.

I urge you to cosponsor this important legislation to take the promising research and translate it into actual treatments for children and adults across the country diagnosed with SMA. We need a public-private partnership to ensure that the governments significant investment in SMA is brought to fruition.

Thank you very much for your consideration.

Sincerely,

Click here to view a list of the current cosponsors.
And THANK YOU for fighting SMA with us!!!